Day 11: Lily flowers

This is is my eleventh post in a series of seventeen.  17 days of remembering Lilly's 17 months of life as we approach her one year angelversary.

Lillium. 
Kingdom:  Plantae
Order: Liliales
Family: Liliaceae
Subfamily: Lilioideae
Genus: Lilium

True lilies grow from bulbs and have large prominent flowers. 

Lillium Firecracker.

Kingdom:  Heaven

Order:  Christian

Family:  Hollowell

Subfamily: Trisomy 18

Genus:  Homo sapiens

 True Lillys are created by God and large loving hearts.




[Jesus speaking] “'So why do you worry about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin; and yet I say to you that even Solomon in all his glory was not arrayed like one of these.  Now if God so clothes the grass of the field, which today is, and tomorrow is thrown into the oven, will He not much more clothe you, O you of little faith?'" - Matthew 6:28-30

We have fun with Lillian's nickname of "Lilly."  :) 

Day 10: Holidays

This is is my tenth post in a series of seventeen.  17 days of remembering Lilly's 17 months of life as we approach her one year angelversary.

Since Lilly lived 17 months on earth, we were blessed to have her with us for every holiday.  Of course it associates some sadness to that holiday or event as we "remember when Lilly ...."  But I think it is worth it.  For example, today we went to the Christmas tree farm to cut our tree.  Lilly had been with us twice.  This year we had Solomon and he wore Lilly's santa hat.  Being there both hurt my heart yet made me smile as we remembered Lilly with us there previously.

Here are some holiday Lilly pictures:

New Year's Day 2011:

Valentines Day 2011:

Easter 2011:

July 4 / Lilly's birth day 2010:

and 2011:

Reformation Day / Halloween 2010:

and 2011:



Thanksgiving 2010:

Thanksgiving 2011:

Christmas 2010:

In searching for an appropriate scripture for today's post, I came across:

"The Levites calmed all the people, saying, “Be still, for this is a holy day. Do not grieve.” - Nehemiah 8:11

I thought of how in American we so often put such a heavy emphasis on celebrating the holidays ("holy days").  And how disappointing - or sad - they end up being for so many people.  If this is something you are struggling with this holiday season, remember:

"The Lord is close to the brokenhearted and saves those who are crushed in spirit." - Psalm 34:18

Day 9: Lasts

This is is my ninth post in a series of seventeen.  17 days of remembering Lilly's 17 months of life as we approach her one year angelversary.

I thought a post on "lasts" would be appropriate to follow yesterday's post of "firsts."  But as I considered ideas, it seemed all I could really focus on was Lilly's last day.  I decided to go with that rather than "last day at church," "last bath," "last doctor's appointment" - even though I remember those things.


Lilly's last meal was pureed spinach with orange juice via her g-tube.  I don't have a picture of that, but here is another of her getting a meal -this was taken at the zoo (Oct. 2011):

After a meal, I had to keep Lilly upright and still for a few minutes, or the meal would come right back up.  Her favorite thing to do was to look at and feel the pages in her fuzzy animals book.  We kept it at the table:

Lilly LOVED her weekly physical therapy session and occupational therapy session.  She had her last physical therapy session on her last day and her therapist said that Lilly had done her best since her open heart surgery the past November.  I so wish I had a picture of Lilly with both of her therapists!  But here is a picture of her doing some therapy homework with me:

I took pictures of Lilly almost every day of her life because I never knew what day would be her last.  I took the last picture I have of her alive on Dec. 14, the night before she died.  She is snuggling with big sister Tabby.  She's wearing her sock monkey pjs, which I kept on her the next day because they looked so cute and comfy on her.

The last video I have of Lilly, I took and posted the morning of the day she died.  I still shake my head watching it.  Who would have suspected that day would have been her last?

Finally, the very last time I held my Lilly was after her viewing, Dec. 18.  After most everyone had gone, I just had to pick her up out of her coffin and hold her one more time.  She was cold and heavy and stiff.  But her hair still tickled me and I just held tightly.  We got our last family picture made and how crazy it is that it turned out to be one of our best.  But it isn't one that I want to enlarge and frame.  :(

What a beautiful doll baby she was.

[Jesus speaking] "I am the Alpha and the Omega, the First and the Last, the Beginning and the End." - Revelation 22:13

On a different note, I shared with other Trisomy angel moms about Hunter crying for the first time over Lilly yesterday.  A number of the moms shared their experiences with their living children and how they grieved.  Apparently grief can be delayed in boys and in also just in younger children.  As they mature they experience the grief differently.  Today Hunter was pretending to be my pet dog.  Then he started to cry and said he was a dead dog and he insisted that I bury him.  I played along, knowing he's working things out in his mind.

Day 8: Firsts

This is my eighth post in a series of seventeen.  17 days of remembering Lilly's 17 months of life as we approach her one year angelversary.


Firsts.  We all remember the first time we did new things.  I had fun today remembering a number of Lilly's firsts. As you can tell by my selections, we enjoyed doing "normal" family activities with her as much as possible.

First stroller ride (August 16, 2010):

First smile (November 1, 2010).  I don't have a picture of Lilly's first smile but here is one a few days after that:

First snow (December 4, 2010)  (I know - you can't see it in the picture - but it was falling!):

First trip to the Christmas tree farm (December 11, 2010):

First bite of food - coconut oil! (March 2, 2011):
 

 

First swim (June 23, 2011).  She loved being in my water sling in the water:

First boat ride (August 14, 2011).  Hunter is telling Lilly how to drive the boat:

First trip to the zoo (October 11, 2011):

Hmmm ... now that I've posted these I am having second thoughts about some.  To have a "first" do you need a "second"?  There are two things that Lilly only did once (boat ride and zoo). 

Hunter had a "first" today.  This afternoon he came and wanted to sit with me and started talking about when Lilly died.  He asked me some questions.  Then he started to cry and said he missed Lilly so much.  That is the first time Hunter has ever cried about Lilly.  All the other times he talks about her he smiles and talks about the exciting things she is doing in heaven.  My poor little guy.


"We love because GOD first loved us." - 1 John 4:19

Day 7: Milestones

This is my seventh post in a series of seventeen.  17 days of remembering Lilly's 17 months of life as we approach her one year angelversary.

Though I know every day is a gift from God, Lilly is the one that taught me to not to take that lightly.  Indeed every breath we draw is a gift.

For Lilly, every day she lived was a milestone.

Of the cases of  Trisomy 18 that are diagnosed prenatally a year, more than half end in termination, miscarriage, or stillbirth.  Only 600-700 are born alive. Lilly was born alive.

50% of the babies with Trisomy 18 that survived birth die in the first week.  Lilly survived those crucial first 7 days.

90% of those babies that survived past one week die before 6 months.  Lilly celebrated her sixth month.

That leaves only 5-8% making it to one year old.  Fireworks were seen all over the country on Lilly's 1st birthday.  ;)

Of those 5-8% of children with Trisomy 18 that made it to their first birthday, 60% make it to 5 years old.  Lilly did not.  

"LORD, remind me how brief my time on earth will be. Remind me that my days are numbered--how fleeting my life is." - Psalm 39:4

Day 6: Lilly's broken heart

This is my sixth post in a series of seventeen.  17 days of remembering Lilly's 17 months of life as we approach her one year angelversary.

Lilly was born with two holes in her heart.  They did not close on their own as holes can often do.  This is called ventricular septal defect, or VSD. 

In explaining Lilly's heart condition to Hunter, I simply told him that "Lilly's heart was broken."  It needed to be fixed. 

Easier said than done.  To this day, I still can not believe how difficult it is to get most heart surgeons to accept a patient with Trisomy 18.  We live in North Carolina, in an area surrounded by highly respected hospitals.  But no one would accept Lilly as a patient because it is "unethical" to treat a child that was just going to die.  (Meaning since she was going to die, she shouldn't have to be put through the trauma of surgery.  Never mind that that surgery could very well extend her life ....)

Have you read in news stories about people that are forced - by the courts - to accept treatments for life threatening illnesses like cancer?  I have.  How ironic.

Thank God for Wolfson's Children's Hospital in Jacksonville, Florida.  Thank God for their love and acceptance of Lilly.  Thank God for their surgeons and the team there.

When Lilly was 3 month's old, she was too tiny and weak for the complete VSD repair surgery.  So a pulmonary artery band was placed in her heart. 

The band helped Lilly to gain weight and get stronger.  When she was 16 months old, we returned to Wolfson's for Lilly's "broken heart" to finally be fixed.  Surgery went smoothly, once again, and she healed up quickly, just as good, if not faster, than a "normal" child.

Lilly's heart was fixed and functioning normally. 

"He heals the brokenhearted and binds up their wounds." - Psalm 147:3

Day 5: Siblings

This is my fifth post in a series of seventeen.  17 days of remembering Lilly's 17 months of life as we approach her one year angelversary.

In spite of how Lilly and her circumstances could make things difficult for our family at times, her siblings absolutely adored her and were so proud of her.  Both Tabby and Hunter have things that belonged to her and treasure them.  They talk about her every day.  They both look forward to seeing her in heaven again one day. 

During her life, it was obvious Lilly loved them both back.

Solomon will never meet his big sister Lilly in this life.  But we tell him all about her.  Lilly loves him already.  Look in the bottom right of this picture of Solomon visiting Lilly's grave. 

Did you see the rainbow?!!  A "hello" from Lilly to her "rainbow baby" brother!

"Love one another with brotherly love, in honor giving preference to one another;" - Romans 12:10